Asperger’s timeline : Events Leading to Diagnosis

Part 1.

Alfie’s Asperger’s timeline : events leading to diagnosis is important. I am sure there may be triggers here that others can relate to.  You may want to prepare yourself because I cover all the minor details! It may seem very long winded but I do feel it is important to set the scene.

I had an awful pregnancy.  Not one day went by when I didn’t have pain in my lower back and stomach ache. I was also a Strep ‘B’ Carrier which can lead to meningitis if antibiotics aren’t given before the birth.

At 23 weeks I went into early labour and was pumped full of Steroids to prevent an early birth.  I remember the doctor telling me that if my baby was born today, it would’t be good and it probably wouldn’t survive.

All systems go!

At 39 weeks I was taken into hospital for a planned Caesarean section. Prior to this I had had one emergency ‘C’ section and three planned. Alfie was to be my fifth. Because of Step ‘B’ I was given Antibiotics an hour before to make sure he did not catch it.

We welcomed a little boy into the world. He weighed 7lbs 10oz and was born at 1.50pm.

By 6pm he had developed a rash all over him.  He had also started to make a shrill noise which was a possible sign of meningitis. The doctor took him away and kept him under close observation for the next few hours. He was returned at 6am and thankfully seemed to be ok. The rash got worse and no explanation was ever given.  It lasted for almost 3 months.

We went home four days later.  Alfie was a breast fed baby.

I hope you are still reading Alfie’s Asperger’s timeline : Events Leading to Diagnosis. I wouldn’t want you to miss any important details or triggers.

Part 2 of Alfie’s Asperger’s timeline : Events Leading to Diagnosis.

When the time came to be vaccinated he developed a severe reaction to the Whooping Cough jab and so was never given it again.  After the jab Alfie cried for nearly 24 hours and nothing we did could console him.

By the time Alfie was 6 months old he had been readmitted into hospital with breathing difficulties.

By the time he was 12 months he had been rushed to A&E three more times with the same symptoms. He was given steroid treatment and oxygen before being sent home.

Get your coat.

Following on from this it became a regular occurrence and we often spent our evenings in A&E up until about the age of 10.  Seeing your child in distress because he could not breathe was terrible and I wouldn’t wish it on anyone. Finally he was referred to a specialist and given steroid inhalers, along with one of those awful masks.

I went back to work when Alfie was 18 months. Not because I wanted to but because I had to. Alfie attended a lovely nursery close to where my husband worked.

Part 3 of Alfie’s Asperger’s timeline : Events Leading to Diagnosis.

An interesting read and one i’m sure many of you can relate to.

Nursery days were very stressful for my husband because Alfie never wanted to go. He would kick and scream and work himself up into a right state.  We thought that over time he would get used to it but he never did. Had we known what we do now we would never have sent him to nursery.  However, it is easy to be wise after the event.

Asperger's timeline : Events Leading to Diagnosis

Alfie

Every day at Nursery Alfie was sent home with a report card. It read Alfie likes to play on his own and doesn’t really mix with the other children.  He likes to line things up and walk backwards and forwards over grids in the park.  He also liked to go up and down steps.  They also said he could be finicky with food.

 

Speech was slow…….

We started to notice that his speech wasn’t as good as it should have been. We thought it was because his older sisters did everything for him and so he didn’t need to. He was referred to a speech therapist but they did not seem concerned and discharged him. Within a couple of months his speech took off and because he attended nursery his speech became what I call ‘Posh’. It was like he was talking with plumbs in his mouth!

At the age of 3 years old we took him to his first air show and boy was that a mistake. He was absolutely terrified! To be fair to Alfie though jet planes are very noisy. We took him home and thought nothing more about it.  In November we took him to a fireworks display where he became very distressed.  Again they are loud and sudden so we took him home and thought no more about it.  As he got older we tried to take him to another display but he point blankly refused to go. He said they were too loud and hurt his ears.

Part 4 of Alfie’s Asperger’s timeline : Events Leading to Diagnosis.

Alfie started Primary school a year later than other children, because the Nursery were allowed to teach him up until then. He was nearly 5 when he started at primary.  This was when we started to suspect something was wrong.

Loner….

Alfie continued to play by himself which made him stand out from the other children.  He could often be seen pacing up and down the school yard on his own. This broke my heart. I questioned the school about why he had no friends and they just said he was a loner.  For me this wasn’t normal but i left things as they were to see how things went as he was still new to the school. I just thought he needed more settling in time but his school life never changed.

Give it a chance….

Asperger's timeline : Events Leading to DiagnosisSoon after this, the bullying started. He was called weird and stupid and after each school day he would come home and have an Asthma attack.

Little did I realise at the time, these were not Asthma attacks at all but full on panic attacks.

He would say things like ‘Nobody likes me’, ‘I would be better of dead’, ‘I have no friends’, ‘I can’t breathe’ and ‘I feel like I’m having a heart attack’.  This was so frightening to have to watch every day and because I thought it was asthma I gave him his inhaler which seemed to calm him down.  I know it sounds terrible but I needed to get to the bottom of these asthma attacks and so one day I video’d one to show the doctor.  The doctor confirmed the attacks were panic and not Asthma.

Asthma attack?

One day he returned home from school and said I had an asthma attack in school today.  He said ‘I told someone to stop talking at the dinner table because it’s not allowed and the teacher saw me’.  ‘I was made to stand in front of the whole school and humiliated’.  He said he couldn’t breathe and that he had asked for his inhaler but they refused.  At no point did they ring me to tell me what had gone on.  To them Alfie was just an inconvenience and the boy that cried a lot. I emailed the school right away and warned them that if this ever happened again there would be consequences.

Part 4 of Alfie’s Asperger’s timeline : Events Leading to Diagnosis cont…………

Soon came the broken bones.  Someone pushed him off the top of the slide but he never saw who it was.   The school made out it was an accident but Alfie is adamant it was a push.  Not one teacher went over to check he was ok even though he was lying on the floor in pain and they were talking on the yard.  Finally a teaching assistant picked him up and took him inside.  It was still some time before they called me.

Allergies and back pain

Around this time he started to develop back pain which we thought was due to his height as he was very tall for his age. Apparently it is a symptom of Asperger’s but at the time we had no diagnosis so it was being treated as bad posture and tight ham strings which is also a common with Asperger’s.

He suffered with ear infection after ear infection. I lost count of how many times he had a perforated ear drum because of it.

He also developed food allergies and allergies to animals and dust as well as skin rashes and eczema.

Writing this blog on Alfie’s Asperger’s timeline : Events Leading to Diagnosis has reminded me just how much Alfie suffered as the Bullying continued……..

Nearly there!  Alfie’s Asperger’s timeline : Events Leading to Diagnosis

Asperger's timeline : Events Leading to DiagnosisThe bullying continued and Alfie started to have melt downs within school time which was very unusual. Normally he would bottle it up until he came through the door and then let go, kicking furniture becoming very angry and distressed until he felt like he was dying and couldn’t breathe anymore. I asked the school to refer him to the Child and Adolescent Mental Health Service (CAMHS) team but they refused.

At this time I had noticed Alfie was struggling with Maths and English even though his teacher said he was above average for his age. His grades began to drop and I was worried.  This was when I started to pay for private tuition. I felt the school was letting him down.  He always complained of feeling like his head was about to explode when trying to work out Math.  He had a huge fear of failure too. He is a real perfectionist. If he couldn’t do it well he would just give up.

Things just seemed to be getting worse and I was at the end of my tether. Stick with me through Alfie’s Asperger’s timeline : Events Leading to Diagnosis.

The weeks went by as Alfie began his tuition. I would be in the kitchen pottering about and all I could here was the squeak from the chair he sat on.

One day after  the lesson had finished I went into the room and asked his tutor if the squeak got on her nerves too?  She said she was going to speak to me about it.  She said “Please don’t take this the wrong way but does Alfie have any type of condition such as ADHD or Aspergers?” I told her I had my suspicions, but that the school wouldn’t listen to me when I asked them to refer him to Camhs.   She said there was definitely something wrong because he was fidgety during her lessons and could not remember doing the work she was going over with him in school.  She kindly wrote a letter to the school asking them to reconsider. They didn’t.

Enough was enough!

I decided to go into school and speak to the headteacher about the bullying and meltdowns. She respondedAsperger's timeline : Events Leading to Diagnosis by saying he is over sensitive but that he was very clever and there were no concerns.  It was at this point she told me of the meltdowns he had been experiencing in school too.  Up until this time I had no idea as Alfie hadn’t told me.

When I asked him ‘why he never told me?’ he said ‘he didn’t want to worry me and that by going into school to tell them, I made things worse for him.

The children would leave him alone in school and then pull his hair and kick him outside the school gate on the way home instead.  The teacher said she would keep an eye on things.  Not much more to go on Asperger’s timeline : Events Leading to Diagnosis.

We cant get you inside so we will get you outside…..

It went on for a few more weeks until I found myself up at school again.  Alfie was being bullied despite what she said. It just so happened the child bullying him had a parent on the PTA.  I told her I was not happy that Alfie was suffering and wanted a referral.  That day he had had another melt down in school and so she finally she agreed to refer him to CAMHS!

Finally!

We waited about 6 months for the referral which was lucky when I heard other people had had to wait for up to two years.  Within this time he had his fingers broken by another bully. The school says it must have been an accident. Alfie says otherwise.

The letter arrived and were given an appointment for the following week.

When we got to the hospital we were taken to a small room where they explained what would happen.  They said they had already watched Alfie in school.  I knew they were going to school they just didn’t tell me when.

They took myself and my husband to a different room and Alfie stayed where he was.  We were ask questions about his daily life while he was playing games and chatting through his assessment.

The outcome of Alfie’s Asperger’s timeline : events leading to diagnosis

45 minutes later we were brought back together and they gave us the Asperger Diagnosis. We weren’t really prepared for what they told us next  ….  Sorry but we can’t offer any help as we don’t have enough funding.  You will just have to get on with it.  We will write to the school and let them know though and we can offer telephone support if you need it.

Anyway at least we knew what we were dealing with now.  It was up to us to find ways of working with Alfie  to help him cope with it and we did!  Please subscribe to my website to stay up to date with our story and pick up some handy tips along the way.  Thank you!

Please go here to read my post about Asperger’s being a Blessing or a Curse.

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